at what point is transplant suggested?

[Jane]

At Jesse's clinic appointment yesterday his doctor suggested we talk to the transplant team. We were completely shocked.

Jesse's pfts have gone between 60 and 41 this year- mostly in the 50s.

He has been on IVs a lot this year, but his sats are high and his energy level is good.

We know his doctor tends to be very aggressive, but isn't it soon to be talking transplant?

 

[Jane]

At Jesse's clinic appointment yesterday his doctor suggested we talk to the transplant team. We were completely shocked.

Jesse's pfts have gone between 60 and 41 this year- mostly in the 50s.

He has been on IVs a lot this year, but his sats are high and his energy level is good.

We know his doctor tends to be very aggressive, but isn't it soon to be talking transplant?

 

[Jane]

At Jesse's clinic appointment yesterday his doctor suggested we talk to the transplant team. We were completely shocked.
<br />
<br />Jesse's pfts have gone between 60 and 41 this year- mostly in the 50s.
<br />
<br />He has been on IVs a lot this year, but his sats are high and his energy level is good.
<br />
<br />We know his doctor tends to be very aggressive, but isn't it soon to be talking transplant?

 

[tleigh]

Jane
When you hear transplant that can be scary. I have just been faced with this conversation the past month. For me, the doctor's concern is that it could take one really bad round of infections to really do a number on my lungs. So, they have encouraged me to start the process and to get my "ducks in a row" so to speak. To start the eval process while I am healthy enough to get through it all and then if it is a while before I am actively listed-great! Everything will be in place if and when it is necessary. I guess for me I want it to happen at just the right time when I am sick enough but not too sick.

Know also that this (like the rest of CF) is very individual. Meaning, for one their quality of life could be just fine w/ pft's in the 30's for another their QOF stinks and pft's are in their 50's. So it's a very personal choice.

 

[tleigh]

Jane
When you hear transplant that can be scary. I have just been faced with this conversation the past month. For me, the doctor's concern is that it could take one really bad round of infections to really do a number on my lungs. So, they have encouraged me to start the process and to get my "ducks in a row" so to speak. To start the eval process while I am healthy enough to get through it all and then if it is a while before I am actively listed-great! Everything will be in place if and when it is necessary. I guess for me I want it to happen at just the right time when I am sick enough but not too sick.

Know also that this (like the rest of CF) is very individual. Meaning, for one their quality of life could be just fine w/ pft's in the 30's for another their QOF stinks and pft's are in their 50's. So it's a very personal choice.

 

[tleigh]

Jane
When you hear transplant that can be scary. I have just been faced with this conversation the past month. For me, the doctor's concern is that it could take one really bad round of infections to really do a number on my lungs. So, they have encouraged me to start the process and to get my "ducks in a row" so to speak. To start the eval process while I am healthy enough to get through it all and then if it is a while before I am actively listed-great! Everything will be in place if and when it is necessary. I guess for me I want it to happen at just the right time when I am sick enough but not too sick.

Know also that this (like the rest of CF) is very individual. Meaning, for one their quality of life could be just fine w/ pft's in the 30's for another their QOF stinks and pft's are in their 50's. So it's a very personal choice.

 

[mag6125]

Wow that does seem soon, my docs started talking to me about it when my pfts were consistantly below 30%. I didn't actually go for evaluation until my pfts were around 24% and not going back up anymore. They said they start talking about it/referring people then because they feel its better to be proactive and have us seen by the team so they know who we are and have them say not now but come back in 6 months or so. They also do this because they've had people put it off who then get real sick real fast and are too sick to go through the evaluation. They have told me that if I were to be admitted to the hospital being very very sick they would go ahead and transfer me to Cleveland Clinic where the transplant team is so I'd be there if/when new lungs came.

Did they say why they want to talk to the transplant team so soon? That really does seem too soon, but that's my own opinion. Are they maybe concerned that with being on ivs so much that his pfts are dropping and not getting as much bounce back? If you want to ask me anything about my eval or decision on when to do it feel free to pm me!

 

[mag6125]

Wow that does seem soon, my docs started talking to me about it when my pfts were consistantly below 30%. I didn't actually go for evaluation until my pfts were around 24% and not going back up anymore. They said they start talking about it/referring people then because they feel its better to be proactive and have us seen by the team so they know who we are and have them say not now but come back in 6 months or so. They also do this because they've had people put it off who then get real sick real fast and are too sick to go through the evaluation. They have told me that if I were to be admitted to the hospital being very very sick they would go ahead and transfer me to Cleveland Clinic where the transplant team is so I'd be there if/when new lungs came.

Did they say why they want to talk to the transplant team so soon? That really does seem too soon, but that's my own opinion. Are they maybe concerned that with being on ivs so much that his pfts are dropping and not getting as much bounce back? If you want to ask me anything about my eval or decision on when to do it feel free to pm me!

 

[mag6125]

Wow that does seem soon, my docs started talking to me about it when my pfts were consistantly below 30%. I didn't actually go for evaluation until my pfts were around 24% and not going back up anymore. They said they start talking about it/referring people then because they feel its better to be proactive and have us seen by the team so they know who we are and have them say not now but come back in 6 months or so. They also do this because they've had people put it off who then get real sick real fast and are too sick to go through the evaluation. They have told me that if I were to be admitted to the hospital being very very sick they would go ahead and transfer me to Cleveland Clinic where the transplant team is so I'd be there if/when new lungs came.
<br />
<br />Did they say why they want to talk to the transplant team so soon? That really does seem too soon, but that's my own opinion. Are they maybe concerned that with being on ivs so much that his pfts are dropping and not getting as much bounce back? If you want to ask me anything about my eval or decision on when to do it feel free to pm me!

 

[CountryGirl]

It may be soon to be talking about tx but its all relative.

The drs may be looking at the patterns in which Jesse's pfts are dropping and have been dropping over the past year or two. Also they may just want you to be prepared incase something drastic happens and he doesnt bounce back next time.

It's always best to be prepared and know what to expect....also since Jesse is only 15, the list is different than for adults. Children get lungs based on how long they've been on the list, not how sick they are, so that may be another reason they want to start talking about it now.

 

[CountryGirl]

It may be soon to be talking about tx but its all relative.

The drs may be looking at the patterns in which Jesse's pfts are dropping and have been dropping over the past year or two. Also they may just want you to be prepared incase something drastic happens and he doesnt bounce back next time.

It's always best to be prepared and know what to expect....also since Jesse is only 15, the list is different than for adults. Children get lungs based on how long they've been on the list, not how sick they are, so that may be another reason they want to start talking about it now.

 

[CountryGirl]

It may be soon to be talking about tx but its all relative.
<br />
<br />The drs may be looking at the patterns in which Jesse's pfts are dropping and have been dropping over the past year or two. Also they may just want you to be prepared incase something drastic happens and he doesnt bounce back next time.
<br />
<br />It's always best to be prepared and know what to expect....also since Jesse is only 15, the list is different than for adults. Children get lungs based on how long they've been on the list, not how sick they are, so that may be another reason they want to start talking about it now.

 

[AimeeSue82]

It's my understanding that PFT's have to be below 30 at their best before you can get listed. Someone with PFTs of 40 or 50 would not be eligible for tx even if their quality of life is poor. I currently have a friend who is trying to get listed with FEV 24%, but because she moved from a high altitude environment to a low one and doesn't require 24 hour oxygen, she's not eligible yet. The tx evaluation process is long and difficult with lots of physical tests (CT's, PFT's, labs, etc) but also difficult emotionally. They interview the patient and their family to make sure everyone is ready and the pt has a strong support system. Lots of talking to social workers and counselors. I had a dr bring up tx with me once mainly to scare me. I had a bad year and once was admitted below 30% and he said "if you stay this low, we'll have to discuss transplant." That got my butt in gear!! Perhaps it's just a precautionary warning.

~Aimee, 27 CF with MRSA

 

[AimeeSue82]

It's my understanding that PFT's have to be below 30 at their best before you can get listed. Someone with PFTs of 40 or 50 would not be eligible for tx even if their quality of life is poor. I currently have a friend who is trying to get listed with FEV 24%, but because she moved from a high altitude environment to a low one and doesn't require 24 hour oxygen, she's not eligible yet. The tx evaluation process is long and difficult with lots of physical tests (CT's, PFT's, labs, etc) but also difficult emotionally. They interview the patient and their family to make sure everyone is ready and the pt has a strong support system. Lots of talking to social workers and counselors. I had a dr bring up tx with me once mainly to scare me. I had a bad year and once was admitted below 30% and he said "if you stay this low, we'll have to discuss transplant." That got my butt in gear!! Perhaps it's just a precautionary warning.

~Aimee, 27 CF with MRSA

 

[AimeeSue82]

It's my understanding that PFT's have to be below 30 at their best before you can get listed. Someone with PFTs of 40 or 50 would not be eligible for tx even if their quality of life is poor. I currently have a friend who is trying to get listed with FEV 24%, but because she moved from a high altitude environment to a low one and doesn't require 24 hour oxygen, she's not eligible yet. The tx evaluation process is long and difficult with lots of physical tests (CT's, PFT's, labs, etc) but also difficult emotionally. They interview the patient and their family to make sure everyone is ready and the pt has a strong support system. Lots of talking to social workers and counselors. I had a dr bring up tx with me once mainly to scare me. I had a bad year and once was admitted below 30% and he said "if you stay this low, we'll have to discuss transplant." That got my butt in gear!! Perhaps it's just a precautionary warning.
<br />
<br />~Aimee, 27 CF with MRSA

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AimeeSue82</b></i>
I had a dr bring up tx with me once mainly to scare me.
~Aimee, 27 CF with MRSA</end quote></div>

I have a feeling this is part of it. Our doc wants Jesse to have the nissen surgery and we weren't ready. By bringing up transplant, she might be trying to encourage us to agree to the less scary option.

She did the same kind of thing when the kids needed g-tubes.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AimeeSue82</b></i>
I had a dr bring up tx with me once mainly to scare me.
~Aimee, 27 CF with MRSA</end quote>

I have a feeling this is part of it. Our doc wants Jesse to have the nissen surgery and we weren't ready. By bringing up transplant, she might be trying to encourage us to agree to the less scary option.

She did the same kind of thing when the kids needed g-tubes.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AimeeSue82</b></i>
<br /> I had a dr bring up tx with me once mainly to scare me.
<br />~Aimee, 27 CF with MRSA</end quote>
<br />
<br />I have a feeling this is part of it. Our doc wants Jesse to have the nissen surgery and we weren't ready. By bringing up transplant, she might be trying to encourage us to agree to the less scary option.
<br />
<br />She did the same kind of thing when the kids needed g-tubes.

 

[JORDYSMOM]

I can only imagine how shocking and unsettling it was for you to hear Jesse's doc bring up transplant. If she is thinking that the reflux is causing all of his problems, she should just come right out & say it though, instead of bringing up a much more serious surgery.


Do you think that the reflux is causing Jesse's breathing problems? I know that before I got my reflux under better control, I woke up almost every night choking on acid. I had a terrible time breathing too. I considered the surgery for myself, but after going in, my GI doc suggested we increase my meds first. I am breathing better overall, but I still have to watch what I eat, or I get the reflux again. Also, sometimes when I bend down, whatever is in my stomach tries to come up, and no amount of meds will stop that. The suregery may still be in my future.

If you need to talk, call me. ((((hugs)))) <img src="i/expressions/heart.gif" border="0">

Stacey

 

[JORDYSMOM]

I can only imagine how shocking and unsettling it was for you to hear Jesse's doc bring up transplant. If she is thinking that the reflux is causing all of his problems, she should just come right out & say it though, instead of bringing up a much more serious surgery.


Do you think that the reflux is causing Jesse's breathing problems? I know that before I got my reflux under better control, I woke up almost every night choking on acid. I had a terrible time breathing too. I considered the surgery for myself, but after going in, my GI doc suggested we increase my meds first. I am breathing better overall, but I still have to watch what I eat, or I get the reflux again. Also, sometimes when I bend down, whatever is in my stomach tries to come up, and no amount of meds will stop that. The suregery may still be in my future.

If you need to talk, call me. ((((hugs)))) <img src="i/expressions/heart.gif" border="0">

Stacey